7 Things You Should Know About Vasculitis

Early diagnosis gives best chance for treatment success

Vasculitis is a family of diseases many people haven’t heard of. In recent years, however, this has started to change — good news for people with vasculitis and the doctors who care for them.

Vasculitis refers to inflammation of the blood vessels. Vasculitis can occur in a number of different ways. It can occur as a secondary condition to an underlying disease or exposure. It also can be a primary illness for which the cause is unknown and where the blood vessel inflammation injures the body’s organs.

Awareness is important

Although vasculitis is rare, awareness of the disease and its symptoms is important, Dr. Langford says. That’s because treatment exists for almost all forms of vasculitis and is more effective in preventing organ damage when diagnosed early.

“In most cases, treatment can cause the disease to go into remission, which means that the condition isn’t active and is no longer causing organ or tissue injury,” Dr. Langford says.

However, for many forms of vasculitis, the illness can return or relapse. While this remains one of the main challenges in managing vasculitis, ongoing monitoring and active communication between patient and physician play a critical role in detecting and minimizing relapses should they occur.

Unfamiliar disease

Because vasculitis can often share symptoms and signs with other diseases, establishing a diagnosis of vasculitis often is difficult, Dr. Langford says.

In addition, because vasculitis is uncommon, patients can benefit from an evaluation at a facility, such as the Center for Vasculitis Care and Research at Cleveland Clinic, that specializes in evaluating and treating the disease, Dr. Langford says.

There, a team that consists of a rheumatologist and other physicians from a diverse range of medical specialties can develop a comprehensive plan based on that individual patient’s vasculitis and the organs or vessels that the disease is affecting.

“If a patient lives a distance from a vasculitis center such that travel for regular visits is difficult, physicians can work together with the patient’s home medical team in optimizing that person’s care,” Dr. Langford says.

What you need to know

Here are seven things you should know about vasculitis:

Vasculitis is inflammation of blood vessels. The body’s immune system regulates inflammation.

Vasculitis is a family of multiple different diseases. The types of vasculitis differ in whom they affect and the organs they involve. Some forms are mild. Others are more severe.

Vasculitis can affect any of the body’s blood vessels. In vasculitis, the blood vessel walls can thicken, leading to vessel narrowing or blockage. If the flow in a blood vessel with vasculitis reduces or stops, the tissues that receive blood from that vessel begin to die. Vasculitis can also weaken blood vessels, leading to enlargement of the vessel (called an aneurysm) or disruption of the blood vessel wall, with bleeding into the surrounding tissue. In some forms of vasculitis, inflammation can occur in tissues other than blood vessels.

Vasculitis is treatable. The type of treatment will depend on the form of vasculitis, the affected organs and disease severity. The main goal of treatment is to reduce inflammation in the affected blood vessels and tissues. Doctors aim to reduce or halt the immune response that is causing the inflammation.

Research is actively ongoing to develop more effective forms of treatment and ultimately to understand the causes of vasculitis. For example, research is under way at the Cleveland Clinic by investigators within the Center as well as with collaborators throughout the world. Additionally, the National Institutes of Health funds the Vasculitis Clinical Research Consortium, in which the Cleveland Clinic participates.

We welcome your comments. However, we cannot provide a medical opinion without an in-person consultation. To learn about Cleveland Clinic services available to you, please fill out our WebMail form.

Peggy Simmons

My daughter was stricken with vasculitis neuropathy it became noticable in Nov of 2012. In January of 2013 she could not walk & her hands clawed up on her Children’s Hospital of Michigan Drs said nothing was wrong with her, that she was faking & 7 months and 2 drs later did we get the diagnosis. My daughter was 12 when it started the youngest case the treating dr had seen. She will be 15 this year. She has to have infusions every month.

themimi43@yahoo.com

What type infusions ,antibodies IV medicine called gamagard not sure of selling ?

stacy erford

Can this just affect extremities? My husband has a similar looking area around his ankle. He lost other leg at young age and this showed up about a year ago.

Terrie

My husband had a similar looking area on his right leg. Now both legs keep swelling up and his iron is low and his blood count is low.

heather

Yes… I had it on both ankles then it moves up the legs slowly

Asd7504

I fell and broke my shoulder and started taking Aleve for the pain. I had an allergic reaction to the Aleve and went to the ER and was diagnosed with Vasulitus right away. Two days after being diagnosed I could not walk and was hospitalized for several days. I was put on medicine for 4 months and had to have blood test done every week. It is now 7 months later and I still have some tests to do. Doctor said I am allergic to Nsaids and that is what caused it.

Marianne Vennitti

Thank You Dr.Langford for joining us on Social Media to educate patients. As a Rare Disease advocate living with #Cryoglobulinemia I appreciate this progressive move in unify patients and physicians. @mvennitti @allianceforcryo allianceforcryo.org

Marita Martin

I want to thank Dr Langford for keeping me in remission with the Wegener’s Granulamtosis ( other wise know as vasculitis) for the last 7 years or so. All of mine has been in my sinus area.

crystabyl

Seeing the actual rash that Vasulitus produces and the symptoms, gives me the answer to the what I had years ago. It came on me after a series of tanning bed sessions. The rash, joint pain,numbness, weakness and weight loss — had it all and the doctor I was seeing said it was a reaction to the tanning bed cleaner that was used. WOW! I have not had anymore symptoms since I stopped going into tanning bed.

Keycarr

I had a large varicose vain in my leg and started getting small brown spots near my ankle. I was told it was blood leaking around the vain and could this be Vasculitis?

Jim Ciccarello

Are Hives (chronic Urticaria) and Vasculitis related?

jmvks

i have urticarial vasculitis. It was diagnosed by skin biopsy. Good luck.

Sharon Steeler Webster

I think they are. I have both of them.

Debra Easom Wiggins

They say I have fibromyalgia it sounds more like I have this

jmvks

Me too!

Sharon Steeler Webster

Just wondering if you had stress going on too? I had a lot of stress which aggravated it. Since I got rid of the stress I no longer break out in hives.

jmvks

I may have had it in the beginning…but who knows what the cause was. Now i try to live as stress-free life as possible to help myself out in that regard. Having said that, however, i do believe that simply having the hives ( and the discomfort they cause) adds stress. My dermatologist feels that way too. That’s why they sometimes prescribe anti-anxiety medications to help people relax (that and they have antihistamine properties sometimes too).
The mysteries of the human body are many!

Tina Hill

My husband is part black(VERY light skinned)and his lower legs from tops of his feet up to mid calf are stained dark brown… the VA medical center said its blood stains in his cell under the skin…could it be vasculitis? I want him to see a real doctor, i don’t trust the VA

cody marody

Will summa western reserve be able to diagnose an issue

Teri bibb

My daughter had HSP twice when she was younger. She complained of a severe stomach ache and broke out with a rash up and down her legs. Pediatrician said it was an auto immune thing. Is there any relation? Her joints would swell up in her ankles and hands. The second time she had it, it lasted from January to April. Anytime she was physically active it would flare up. She was pitiful. She couldn’t walk and her legs and joints would hurt.

jmvks

HSP is a form of vasculitis.

barber883

i am a 47 year old male that just got diagnosed with hsp i have a very sever case of it and with no luck using predisone i am now going thru a round of chemo

Jenny L Porter

I read where researchers published and endorsed by the American Heart Association know nightshade foods and tobacco products cause inflammation, arteriosclerosis, heart attacks.

jmvks

What does that have to do with anything?

Jenny L Porter

Well…jmvks, since you want a conversation, veins and arteries are the subject of this vascular article. The research indicates that when you ingest (swallow, breathe or touch) nightshade plants via what is found in some common foods, all tobacco products, some medicines, cocaine, heroin and the source list goes on identifying over 2,000 plants… the poison component settles anywhere it can get carried to in your body if your liver doesn’t filter it out quickly. This type of inflammation appears with all kinds of “faces” and gets called all kinds of disease with symptoms being treated rather than the person backing off from ingesting the nightshade offender. It is reversible if you can get the poison out of your system. Hope that made some kind of sense to you. A physician will have to determine if you have a fungus or what type toxin in your blood. Hope you feel better.

jmvks

OK Jenny. Thanks. I do understand that “you are what you eat”, to dumb it down a little. But I have suffered from this chronic disease for 14 years. (have you? Or, are you a medical doctor?) And in that time have seen an internist, 4 dermatologists, 3 rheumatologists, an immunologist, a hemotologist, and an oncologist. I wonder why none of them have “determined” what type “toxin” I have in my blood. BTW, I don’t smoke, use heroin or cocaine. Thanks for listening.

The larger the fish, the more mercury and pcbs in them. Do you use motion sickness pills with scopolamine, digitalis…?

Jenny L Porter

If you are on facebook I will tell you my story.

jmvks

OK

dbrigode

Is there a difference between this and stasis pigmentation? I have something similar on both of my calves.

Moosewalk

I have vasculitis of the brain and , luckily, found my way to Cleveland Clinic. I am very well now as my vasculitis is controlled by doctors who diagnosed my condition and, after much study, prescribed the correct medication to reign in this condition. My own responsility to ensure my own “wellness ” is to maintain a very healthy diet rich in omega-3s and loads of broccoli and nuts. In addition, I own a FITBIT and exercise at least an hour four to five days a week. I was so lucky to have been under the care of expert, caring doctors who ensured my survival and a supportive husband who stood by me and educated himself completely in my problem. The most important question one who has vasculitis can ask is, “what can I do beyond medical care, to bring myself to optimum health?”. Clearly, any kind of vasculitis is not for sissys.

Evin

help! I was diagnosed with “necrotizing vasculitis with fibroid necrosis”. When my tissue was examined and the results shared, nobody knew anything about this. There were only four articles published and nobody (in Maine) had any clue. “Usually confined to the reproductive system”. I had a hysterectomy and pain subsided for a couple months. Now I have a lot of pain in the same general area. My doctor(s) tell me it must be something else. They say, if I go to “some” doctor, they might talk bowel resection or something else. I have no idea if this pain is the same thing, but it feels identical. I’m so lost, I have no experienced doctor to turn to. Any feedback here?

Sandi B

What is the name of vasculitis of the face? I think it starts with s. My husband had it about 15 years ago and was at a major Chicago hospital. It took them days to diagnose and only because an old time allergist happened to see him and knew what it was!

Barbara

My father was diagnosed with vasculitis in 1995 when he began losing the ability to swallow. He was treated with megadoses of steroids and a chemo drug called cytoxin. The vasculitis went away but he died about 6 months later from the side effect of the cytoxin frying his lungs. I am posting this as a precaution to those being treated with chemo. We were told NOTHING by the doctor about this possible side effect until 4 days before my dad took his last breath. Hopefully there are better treatments now.

Susan Hankey Cribbs

My husband has now had 5 episodes of idiopathic vasculitis over the last 7 years, treated 4 times at Virginia Mason in Seattle, and once at the Cleveland Clinic. It scares me because he is completely out of it, in severe pain, unable to get up by himself for 24 to 72 hours. The rash takes forever to go away, particularly the ones that break open and scab. The first time, he was given potassium pills and steroids. The last time, he was given two medications that were sulfa derivatives, even though he has know since he was 18 months old that he was severely allergic to sulfa drugs…now we know what happens… His whole trunk turns red! Other than these things, he had had no treatment. What should we do?

neethu

Pls my husband also have vasculaties he have lots of pain n his leg we consult a dermatologist bt no use which doctor I should consult pls suggest me

jmvks

Has he gotten help yet? Try a dermatologist or a rheumatologist.

RN

Magnesium will help

Cindi Runowski

Possible diagnosis of arteritis, is this the same thing? Started prednisone. Having biopsy within 2 weeks. Found by my eye doctor, who was troubled by my vision problems, sent me to eye surgeon who ordered blood test to check for inflammation. I have had symptoms for awhile that I think were dismissed as being related to weight. It wasn’t until eye became involved that diagnosis made. Word of advice: be sure to get regular eye exams! They are a window to what is happening in your body!

deb

I was wondering what was going on with my legs…very mild…but my feet both feel numb on the bottoms…more intense at times but mild at other times and not so noticeable when wearing shoes/socks. I do get edema in the evenings and the left leg more than the right. I cut down considerably with fast foods and I try to walk . I will ask my doctor about it at my next appointment. Thanks for the info!

Sharon Steeler Webster

I have hypo compliment urticaria vasculitis with Raynoids. I was diagnosed 1991. I started breaking out into hives then my small toe turned black due to lack of blood supply. Since then I was then told I had needed a lung transplant due to lack of blood soppy and for what little I smoked played a part in it too.

Tina Hill

My husband is mixed ,native American,black and white but his legs from ankles up almost to knees has darkened patches and spots like this ….only brown instead of red. He is diabetic but not bad enough for any meds,we are using diet and lifestyle changes to manage his blood sugar. Could his legs be vasculitis? I looked at it last night and it’s much worse.

Debra Easom Wiggins

they diagnosed me with fibromyalgia is that a form of this

Debra Easom Wiggins

Because what I have is more like this my face stay back out

MJ

What is the difference between
Cellulitis & vasculitis??

Randy Ulery

Initially, Vasculitis was suspected but after brain biopsy at Cleveland Clinic I received a diagnosis of intravascular lymphoma — a very rare type of lymphoma. After 7 CHOP-R chemotherapy sessions at Baptist East Hospital, Louisville,KY I am now in remission and rehab for strokes associated with the lymphoma. Also working on my typing …

Sara

My husband was diagnosed 7 years ago with Vasculitis of the brain. (Susac Syndrome) This is a rare form of the disease. The Drs first misdiagnosed and thought he had Encephalitis of the brain. They started him on predizone and Oral Chemo for a year. Also, IVIg infusions. Then he took Mycophenlate for 5 years. He has been in remission for now almost 2 years. Glad he was at the U of M so they could diagnosed him properly.

Margarite Danish

If anyone knows of a good Rhemetologist in Houston tx please contact me I can’t seem to get anyone to help me I have microscopic polyangittis nd it’s getting worse the Dr I c now says all they can do is pain management on me but it’s been 4months nd I’m still having a problem with them sending my medical records to pain management so nobody will help me please I’m reaching out help me please u can contact me at margaritedanish63@gmail.com I’m in alot of pain nd need help I don’t know what else to do but I can’t take this pain much more please help me GOD BLESS!!!!!